The twins are 12 1/2 years old and enjoy 6th grade, music, dancing, basketball, lacrosse, their sisters, and most importantly each other.
To recap our story:
On August 23, 2006 Rebekka and I were blessed with two beautiful baby girls (Kerragyn and Giavanna). Little did we know that they were more special than we thought. When they were a few days old they were diagnosed with Cystic Fibrosis (CF).
We knew very little about CF and were devastated. The next few weeks were spent with many tears and more medical jargon than you find on an episode of "House". We were lucky to be surrounded by so many family and friends.
Giavanna spent about a month in the hospital and was able to come home first. That was a very exciting and depressing day. We never imagined that we would have to separate the twins.
Kerragyn spent about three months in the hospital and finally, right before Thanksgiving, we were able to have the whole family together at home.
Since then it has been a blur. The girls are already in 6th grade and growing up way to quick.
We have great doctors and do quarterly visits with a huge emphasis on lung function and weight.
The girls go through a number of treatments daily (nebulizers and “shakie machines at least twice a day, but it can be up to 4 times a day). They take a variety of pills daily, and with every feeding - 30 pills a day.
Every year becomes more difficult as this disease continues to effect their lungs more and more. Giavanna has been hospitalized three times in the last five years including two years ago. Kerragyn has been more fortunate with only a few small episodes but it is only a matter of time.
We need your help now more than ever. Please help us find a cure for CF, either through a donation, coming and being part of our walking team in St. Peter, or just a prayer.
I will never be able to Thank everyone who has supported me through the last 12 1/2 years enough, but THANKS!
God only gives you what you can handle, so smile, and enjoy every day.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.